The Long, Lingering Death
The Long, Lingering Death
Larry Patten
On Hospice Care and When Good Friday Never Ends
The scriptures I know best involve dying and death.
Summarized and politely explained in my childhood Sunday school classes, the week with Good Friday’s cross became more harrowing when I preached the good news as a minister. But didn’t Jesus’ final Friday gasps lead to a happy Easter ending? Whether politely explained or harrowing, some deaths don’t end happily. Indeed, some deaths never seem to arrive.
Last year, I received anguished thoughts from Margie. (As with others quoted, it’s not her name.)
Margie shared about her mother,
“She is . . . still fighting for her life. Now I am just exasperated and irritable. And it doesn’t help that she was a nasty mom to me when I was little either. I know that is bad of me to say that but I do find myself thinking those angry thoughts all the time. This whole thing is cruel and way overdo for closure. God help me.”
God help me.
*
There are many ways to die in the Bible.
What about Judas’ suicide (Matthew 27:3-5)? Any suicide—first or twenty-first century—can emotionally and spiritually convulse friends and family. Even if we are not surprised by Judas’ demise by his own hands, suicide is a troubling death and leaves many grieving survivors.
Moses, old and weary, gazed toward the promised land that dominated his life and yet will elude him as he approached death (Deuteronomy 50:48-52). Moses had regrets, failures. Did he also rejoice? Whenever he took his last breaths and whatever his last thoughts were, wasn’t Moses confident his kin and kind would soon live in the land of milk and honey?
Jael, “most blessed of women,” drove a tent peg into Sisera’s head (Judges 5:24-27). There are other Biblical accounts of brutal deaths. David, lusting for Bathsheba, ordered her husband into the front lines of battle (2 Samuel 11:14-15). How long was it before Uriah the Hittite met the sharp end of a spear? An irritant to the empire, John the Baptizer’s head was displayed on a platter (Mark 6:17-29).
In Jesus’ last and seventh sign in John’s Gospel (11:38-44), Lazarus was beckoned to leave the tomb. Trailing the wraps once binding his three-days-dead body, he was welcomed to resurrected life by his friend Jesus. Alleluia! Did each day after his rising become more precious for him? While John’s Gospel (12:9-11) features a plot by the chief priests to kill Lazarus, there’s no indication if they succeeded. But, by assassination, accident, or disease, he will die again.
I have witnessed considerable dying, death, and grief in the ministry I’ve done in churches and for hospices. I have used the Bible to help me, or to help those I serve, wrestle with mortality. However, I’m not sure the Bible or any traditional or modern theological statements, offer much help with one particular kind of dying.
What happens when the dying person doesn’t die?
What happens when there is a breath followed by another breath, day after day, week after week? Maybe an oncologist warned the family of a dying loved one that the opportunistic illness meant there was only a short time remaining. And yet the loved one keeps breathing. Maybe a hospice doctor or nurse, experienced in death, counseled the family to say their goodbyes. And yet the loved one keeps breathing. Another dawn, and then months of dawns, comes and goes. The oncologist’s office no longer returns calls. The hospice care team now offers hollow reassurances like: we can never tell when or I’ve never seen anyone hang on like this.
Hang on they do.
Phillip, a son wishing to honor his parent, wrote:
“Lingering . . . tick tock, tick tock. Weeks become months, months become years, years become decades. Waiting . . . tick tock, tick tock.
Waiting for my 98-year-old mother to die. Riddled with end-stage dementia, incontinent and wheelchair bound, mom is trapped in a body with a beating heart but a brain that doesn’t work. Heartbreaking.
Lingering . . . tick tock, tick tock. Waiting . . . tick tock, tick tock.
God, please have mercy upon us, take my mom peacefully into your presence tonight.
I have been a good son all these years but I am so very, very tired. Amen.”
A prayer to God because the dying continues: I am so very, very tired.
Margie, mentioned above, who became exasperated and irritable as she cared for her mother, and Phillip’s tick-tock, tick-tock exhaustion, are just two examples of reader comments at my Hospice Matters website. They, like others, question God’s role and their faith.
*
From 2012-2020, I did grief support for a California hospice. Now a retired United Methodist pastor, I also served as a hospice chaplain in the 1990s. With my general background in church ministry, and my particular experiences in hospice, I created a website (Hospice Matters) to explain and advocate for hospice care. Even with people of faith, the subjects of dying, death, and grief are easily avoided. That avoidance contributes to unrealistic thoughts about end-of-life decisions. I once asked how many in an adult Bible study group had recently, or long ago, had the sex talk with their kids. Most raised their hands. I then asked who discussed their dying and death with those same kids. Not one hand was raised, not even by those with adult children.
With weekly essays starting in 2012, I sought to cover all things hospice. I wrote as a non-medical person to a potential audience of terminally ill patients, caregivers, and grievers. In November 2020, I posted my final essay at Hospice Matters. However, I have kept the website online and available.
Though Hospice Matters is an obscure site written by an unknown person, I still receive responses. I answer each one. In 2016, I posted a reflection entitled Why Hasn’t He Died Yet? Scores of weary, angry, frazzled caregivers have left comments since it was first posted.
Carol wrote:
“I am caring for someone who is lingering, and I have both lost any faith I had, and also yelled about God allowing this suffering rather than allowing it to end, which has gone down about as well as you’d expect among people who haven’t felt the need to question their faith. I have also watched the majority of people withdraw while telling me to keep up the good work or keep my chin up. It is a hard road that we chose to tread for compassionate reasons, but yes, now it is beyond a joke, and a lot of us in the family are over it. Which is the opposite of the kind thing we honestly tried to do. It’s ridiculous.”
If a patient is eligible for hospice care, two doctors have agreed there are six months or less to live. The average or mean length of stay in hospice was 77 days* in 2019. The median was 24 days. Why is the median average significantly lower? 28% of the patients died less than a week after starting hospice. Most people wait longer than necessary to use hospice. Isn’t there a way—new experimental therapies, more radiation treatments, answers to prayers—their lives can be extended? Six months seems like so little time.
Six months is long compared to the sudden death from a freeway accident, an IED on a battlefield, or a bullet in a suicide. Many deaths occur in the tearful blink of an eye.
Remember Judas, Moses, Jael (and her victim Sisera), John the Baptist, Lazarus, and—of course—Jesus. Those deaths, brutal or expected, have provided levels of understanding, perspective, and points of reference for people in the Judeo-Christian tradition.
In the Bible, who lingers? Perhaps King David? His old age and death cover the opening chapters in 1 Kings, but as much as he’s fading and feeble, he continued to communicate and wield power. Perhaps Saint Paul? He would languish in a Roman jail, but whatever lingering he did wasn’t an endless dying.
I am caring for someone who is lingering, and I have both lost any faith I had, and also yelled about God allowing this suffering rather than allowing it to end . . .
Six months comes and goes. Maybe the caregiver with a lingering loved one hears about others in hospice care, like the patient dying on the same day he was admitted, or the patient who died when her far-flung family had gathered exactly when a hospice nurse had predicted the death. The caregiver with a lingering loved one envies the family grieving an abrupt death. Tick-tock, on the breathing continues. She or he resents the family able to organize their impossible schedules to say a loving goodbye. Tick-tock, on the breathing continues.
Caregivers with a lingering loved one can feel trapped in a metaphoric Good Friday that never sees a Saturday, let alone Easter Sunday. Jesus’ mother and the disciple are always at the foot of the cross. The Roman centurion with the sponge of vinegar offers it to Jesus, over and over. Regardless of which Gospel you choose, Jesus never declares any of his so-called last words.
The benchmark to enter hospice is six months or less to live.
Hospice staff rightly worry about the prospective patients who delay entering into the Medicare-covered service. Too often, in hours or days, the new patient who hesitated about hospice is dead. They become part of the 28% who die in less than a week. The hospice nurses scramble to address pain issues while social workers or chaplains console a stunned family. Those same hospice professionals, and probably all patients and families, ideally prefer a good death. Within a few weeks, pain gets managed. Legal or financial tasks are completed. Friends and family visit and chat. The hospice chaplain or the patient’s clergy share hopeful prayers. The good death includes holding hands, reminiscing, and flowing tears.
What if a loved one keeps breathing after the six months or less have passed? The caregivers—and in too many circumstances, a sole caregiver—start despising the doctors who apparently lied, distrusting the hospice staff who kept being wrong, and doubt God’s mercy. A next day becomes a next day; Good Friday has no end.
How well does hospice prepare caregivers for a lingering death? How well do various faith traditions prepare believers for a lingering death?
Teresa wrote, two weeks following her husband’s death after nearly ten months on hospice care (and he was homebound for four years prior to hospice),
“Misunderstanding or lack of patience had driven much of what might have been any support network away. I am a person of faith, but I have to confess that "getting my strength from the Lord" became cliché to me and I grew very weary of people's ‘Christianese.’ On the other side now, I see how very weak I am. The trauma of this has left me wondering if I will recover.”
In the inadequate responses I have given to those who found my Why Hasn’t He Died Yet? post, I try not to give advice. Oh, I do sometimes. It’s hard not to share a word of comfort with a feeble suggestion or two. Nonetheless, I am cautious, mindful of how little I know about another’s plight. Most caregivers, like Teresa, have grown weary of Christianese.
I don’t want to craft a tidy checklist of best or worst ways to support caregivers. A lingering death can pull the proverbial rug out from our helpful, thoughtful efforts. However, I will offer a few lessons learned from people who shared their fears, vulnerabilities, and beliefs with me.
Avoid the platitudes and clichés like the truthful but hollow One day at a time or Teresa’s getting my strength from the Lord. They can add more anguish to the caregiver after months and months and months of exhausting, numbing, isolating efforts to support a dying loved one. Whether you are clergy or laity, you likely know the clichés which bring you comfort and the clichés you dislike. Why not abandon all of them?
But don’t abandon the caregiver. Find ways to stay in touch. To listen. To support.
In particular, I urge people of faith to detour around This is part of God’s plan. Many of my colleagues in ministry, and many compassionate, faithful laypeople, rightly find comfort in those words. I am also confident numerous caregivers for a lingering beloved have believed God has a plan for each person. However reassuring that phrase is, be careful with voicing it. For a caregiver, months after hospice’s six months or less to live has become a distant memory, all plans—hospice’s or God’s—can sound more like a cruel joke than a divine promise.
Taylor added a comment at Hospice Matters about a loved one who took years to die. I emailed her after the death, asking what could be said to others in a similar situation:
“Only that they have my heartfelt sympathy and understanding. Caring for a loved one who is lingering towards death trumps all other kinds of caregiving, especially if the loved one has become difficult, as often happens when dementia is involved. I cannot offer advice, only empathy.”
After caring for a parent much longer than any of the hospice staff predicted, Cameron said,
“You, too, matter. If someone is lingering, give yourself permission to carry on with your own life. Your loved one's life is coming to an end, but yours is not and their death is not more important than your life.”
When starting Hospice Matters in 2012, I anticipated common concerns. Patients and their families dread the drugs—like morphine—used for pain relief. Conflicts splinter families when some embrace hospice as the best next step while others claim it’s giving up. There are misunderstandings about the scope of hospice care, with assumptions that hospice handles everything (from changing diapers to literally moving into the patient’s home).
I wrote about all of those. But no subject approached the distress and frustration of caring for a dying loved one who doesn’t die. Some caregivers shared their faith had made the difference in getting through another day. Some began to seriously question God’s presence and promises. All, at the deepest levels, were transformed by the experience. Frederick Buechner wrote in The Final Beast, “The worst isn't the last thing about the world. It's the next to the last thing. The last thing is the best.” With all the sorrowful ways metaphoric Good Fridays can unfold, they become Easter. However, unlike the meticulously planned and predictable Holy Weeks on church calendars, some caregivers never know when “the next to last thing” will end for them.
Taylor’s and Cameron’s insights are worth repeating. It feels right for the concluding words to be from those who offered loving, sacrificial support for another during one of the most difficult times any of us can face:
Their death is not more important than your life.
I cannot offer advice, only empathy.
*From the National Hospice and Palliative Care Organization’s 2018 Facts and Figures report. It was updated in mid-2019.
Larry Patten
Writer & Retired Minister
Larry is a retired United Methodist minister. He has worked in local churches, campus ministry, and hospice. He lives in Fresno, California. His writing has appeared in Spirituality & Health, Ruminate, Christian Century, and Earth & Altar. In 2019, he published A Companion for the Hospice Journey. Reach him at larry [at] larrypatten [dot] com.
Photography by Yuliia Tretynychenko